When I was a kid, I always knew I had neurofibromatosis. I told my friends, but in actuality, I had no idea what having NF meant. To me, all it meant was I had birthmarks on my tummy. Growing up and gaining a few fibromas and having them removed, I still had little information about what was going on with my body.
It wasn't until my son, Denver, was born and diagnosed with NF that I truly understood the depths of the disorder: the fear, the difficulties, the ongoing concern that was connected with living with NF. I imagine this is why my parents didn't talk in great detail about the ins and outs of NF. But for me, having a child with NF makes me want to talk about it and fight - fight for him, and also for myself.
Learning disabilities are often associated with NF1, and watching Denver struggle through school has made me realize that I, too, struggled with those same learning disabilities, which is what made getting through school so difficult. I've learned to be more patient with Denver; I know what he is going through, and it’s hard work.
I am in the middle of finishing my Bachelor’s degree. I hope to graduate within a year and when I do, I will consider it one of my proudest achievements. I hope Denver does too, and sees what is possible through perseverance and persistence.
NF isn't who you are. You control who you are. Be bigger than NF.
Katy Wakin, 36 years old, lives with neurofibromatosis type 1 (NF1) and is a full-time mom, full-time student and part-time recreation and fitness Associate. Katy is a member of the Children’s Tumor Foundation NF Endurance team and lives with her family in Burleson, Texas.